Hi Again, Friends,
Just one day after Mom and I traveled back and forth on the Bay Bridge, that cable broke and backed up/suspended traffic. Thank you, Lord, for Your timing!
We hit the road Monday morning at 6:45 and I didn't drive back into my garage until 8:10 pm. It was a LONG day at UCSF. I'll do my best to walk you through the day and share what we found out.
I started on the hill at Parnassus with a Pulmonary Function Test. I had to do a number of different breathing functions that seemed to truly stretch the limits of my lungs. The technicians that worked with me, Tyler and Kelly, were very patient as we worked around the cough trying to get three good averages from each test. Sometimes it took up to seven tries to get those three good ones. I also had a blood draw from an artery near my wrist to see what my blood gas level is. The directions were to not move and to breath, which was a bit hard considering they couldn't get it on the first try, so had to move the needle around to try to find it. They got it on the second try. By the time I was done, I was kind of exhausted, and that was only the first appointment!
Next was the injection for the bone scan, which involved an IV. The tech, Collette (and yes, she had a French accent!), was kind enough to leave the IV in so I wouldn't need another one for the CT scans. However, when I made it to the appointment for the scans, my creatinine level was borderline again, so they wouldn't let me have the contrast dye, which meant the IV came out as it was not needed. I don't remember the name of the man who took the scans, but he was so patient with me as I had to lie flat on my back and not move-quite a feat given I haven't been flat on my back for a couple of weeks due to the cough, and when I do lie flat, I cough, which I couldn't do during the scan! So we worked out a little system where I would cough until whatever was trying to come up did, then he would start the scan, I would hold my breath for the necessary part, then start over again. All in all, he said the scans came out very clear even without the dye.
I had to lie flat on my back for the bone scan, also, with the box that took the pictures literally nose to nose with me. I could cough, but couldn't cover it with my hands or turn my head. The scan took about 20 minutes. As it started, I could feel myself begin to hyperventilate as I tried not to cough. I had put a cough drop in, but it wasn't helping, so I frantically began to recite scripture and sing worship songs in my head...and God met me there. My breathing began to regulate, I calmed down, and the scan made it all the way to my feet before I began to cough. The technician quickly had the doctor check the scan, declared it great, and I was done!
By now we were late for my appointment with the good doctor, so we headed to Mt. Zion, not knowing what to expect. The 'what' was a LONG wait. My appointment was for 2:30, we got there around 3:15, and saw the doctor and the NP two and a half hours later, around 5:45. In between, I thought I would go crazy. We looked at every page of every magazine in the waiting rooms, none of which are very current, shared some Jelly Bellies my mom found in the bottom of her bag from a trip to the factory some two years ago!, memorized the medical forms lining the wall, stared into space, and fell just short of taking a nap. I did get to meet the nurse, Jay, who I talk to on the phone on a regular basis. That was a nice moment. When the NP and then the doctor finally walked in, we asked if we should order out for dinner!
The good thing about it being so late is that all of the results for the tests were available excepting the bone scan. The Pulmonary Function Test showed that I do not have asthma (go figure!), so I have suspended the use of one of the inhalers and only use the albuterol if I really need it. There is one result that caused a bit of concern, and it is the one thing I didn't write down, so I will have to check with the doctor to be completely sure I got this right, but it was something to do with how well oxygen is absorbed into the blood from my lungs. I am at 64 % of normal in this one (if I got this right), and normal is anything above 80%. What this means for me is unsure at the moment.
I had a CT scan of the brain this time (Matt actually had the audacity to ask me if it meant I have a brain-which, YES, Matt, I do!), and it showed nothing abnormal-so there! The chest scan showed that the nodule that has shown growth before showed about the same amount of growth once again. It also showed what they think might be a good part of the cause of this dreaded cough. I have a lymphangitic growth in my lung, which has been there before, and unlike the nodule, which has defined edges, this does not, appearing as if it creeps or spreads as it grows. The CT of the abdomen showed a small mass in the soft tissue near my colon, which has been there before, but it also showed a new small mass near the other one.
So taking all of that information, we began to address one issue at a time. First of all, I have been retaining water, as my ankles and feet, hands, and some other areas have swelled up quite a bit and quickly. This could also affect the cough, which has been wet and wild. So I am taking a diuretic to help get rid of some of the excess water, and am taking a stronger dose of codeine to help suppress the cough. I started on it last night, and it did help me sleep (I even slept somewhat lying down, not sitting up against the back of the couch!), only waking up once for a short coughing fit. I have to take it on a regular basis, though, so will fight through the sleepiness until my body regulates to it, and will deal with the not so fun side effects of constipation. All for a good night's sleep! Today I felt a little better, only having one bad coughing fit when something hit my throat wrong and set me off. Second, my phosphorus is quite low, so I have to take tablets for that, as well as magnesium. Third, the kids and I had our seasonal flu shots today, and are waiting for the H1N1 to become available.
Lastly, I signed the papers to enter into the trial for the new medicine, Everolimus, along with the replacement one for Sutent, Nexavar. I will travel back to UCSF on November 12th to actually get the new medicine and begin the first treatment, which I will continue orally at home. The treatment, as best I understand, is ongoing, not on a cycle like I've been on up to now. Matt and I have gone over all of the possible side effects and have decided we will just wait and see what happens rather than speculate and panic. The one thing we will pray about, and ask you to pray about as well, is that the balance of doses between the two medicines is correct for me, and doesn't turn toxic. Wow, when it's said that way, it doesn't sound so great.
I'll leave you with some of the words to a song I have grown to love since I first heard it on its release. It's by a band named Kutless, and I'm sure you've heard it on KLOVE. It's called, "What Faith Can Do." The words to this song say just what I have based my walk with cancer on: FAITH.
"It doesn't matter what you've heard
Impossible is not a word
It's just a reason for someone not to try
Everybody's scared to death
When they decide to take that step
Out on the water
It'll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
Overcome the odds
You don't have a chance
(That's what faith can do)
When the world says you can't
It'll tell you that you can!"
Keep walking in that faith, my friends.
Danene
October 28, 2009
Wednesday, October 28, 2009
Sunday, October 25, 2009
A Full Day at UCSF
Hi, Friends,
Tomorrow my mom and I head to UCSF for a full day. We'll hit the road at 6:45 am for the first appointment at 9:15 at the main hospital at Parnassus for a Pulmonary Function Test. I still have the dreaded cough, and haven't been able to use either inhaler for the day in anticipation of this test. Hopefully we'll get some answers and some results, as nothing has worked well so far.
I head down the street for an injection for a bone scan at 11:00, head back to Parnassus for my CT Scans at 12:15, then back to the other facility for the actual bone scan at 2:00. And a scant half-hour after that, I meet with Dr. Ryan at Mt. Zion. Wow! I hope I can keep up with all of that. We should be done just about in time to sit in traffic on the way home.
Most of these tests are in preparation for the trial I am entering. I'll have more of the details on that, and hopefully all of the results of the tests, in the next few days, so will keep you posted.
One good thing from the blood test I had this past week is that my thyroid stimulating hormone, with the help of the thyroid replacement therapy, is finally showing itself to be in the normal range. I think if I was not fighting with this cough and all that goes with it, I would feel pretty good.
So, I get a full four weeks off between finishing Sutent 10 days ago and starting the new trial meds. If I can kick the cough, and figure out why I am swelling in my feet and ankles and elsewhere (perhaps from the steroids? argh!), it could be a nice break to recover, enjoy those foods I usually can't tolerate, and do all the things that have to wait for those breaks from the meds, like go to the dentist, get my hair back to normal, get flu and pneumonia shots, clean up my feet, and so on.
Because of this cough, this has been a rough month. I haven't slept in my bed for a couple of weeks, as lying down causes the mucus to sit in my throat and chest, so I prop up over the edge of the couch and sleep as long as I can, usually 2-3 hours before the coughing takes over. Then it's dozing until morning. I'm sure my family is as tired as I am of hearing the constant hacking. It's time for this to be over!
I was reminded anew, as I read a devotional the other night, that God hasn't forgotten what's going on in my life. He is still very aware of each thing I go through. He knew before it happened that it would happen. That is a comfort to me in those times of feeling cruddy and sorry for myself. He's there, He loves me, He's with me even when I cry out to Him for it to GO AWAY and it doesn't. He has not forgotten me. I will stand on that truth and wait for what His purpose is in all of this.
More soon,
Danene
October 25, 2009
Tomorrow my mom and I head to UCSF for a full day. We'll hit the road at 6:45 am for the first appointment at 9:15 at the main hospital at Parnassus for a Pulmonary Function Test. I still have the dreaded cough, and haven't been able to use either inhaler for the day in anticipation of this test. Hopefully we'll get some answers and some results, as nothing has worked well so far.
I head down the street for an injection for a bone scan at 11:00, head back to Parnassus for my CT Scans at 12:15, then back to the other facility for the actual bone scan at 2:00. And a scant half-hour after that, I meet with Dr. Ryan at Mt. Zion. Wow! I hope I can keep up with all of that. We should be done just about in time to sit in traffic on the way home.
Most of these tests are in preparation for the trial I am entering. I'll have more of the details on that, and hopefully all of the results of the tests, in the next few days, so will keep you posted.
One good thing from the blood test I had this past week is that my thyroid stimulating hormone, with the help of the thyroid replacement therapy, is finally showing itself to be in the normal range. I think if I was not fighting with this cough and all that goes with it, I would feel pretty good.
So, I get a full four weeks off between finishing Sutent 10 days ago and starting the new trial meds. If I can kick the cough, and figure out why I am swelling in my feet and ankles and elsewhere (perhaps from the steroids? argh!), it could be a nice break to recover, enjoy those foods I usually can't tolerate, and do all the things that have to wait for those breaks from the meds, like go to the dentist, get my hair back to normal, get flu and pneumonia shots, clean up my feet, and so on.
Because of this cough, this has been a rough month. I haven't slept in my bed for a couple of weeks, as lying down causes the mucus to sit in my throat and chest, so I prop up over the edge of the couch and sleep as long as I can, usually 2-3 hours before the coughing takes over. Then it's dozing until morning. I'm sure my family is as tired as I am of hearing the constant hacking. It's time for this to be over!
I was reminded anew, as I read a devotional the other night, that God hasn't forgotten what's going on in my life. He is still very aware of each thing I go through. He knew before it happened that it would happen. That is a comfort to me in those times of feeling cruddy and sorry for myself. He's there, He loves me, He's with me even when I cry out to Him for it to GO AWAY and it doesn't. He has not forgotten me. I will stand on that truth and wait for what His purpose is in all of this.
More soon,
Danene
October 25, 2009
Friday, October 2, 2009
A note from Danene's husband and partner in life.
Hey all,
Over the past couple of days I have been just overwhelmed with something I need to share. As most of you know, a year ago Danene had what we know as life saving surgery to remove her left kidney. During the recovery process in the hospital something happened to our relationship. There were three nights in a row that I stayed the night to get her through the painful recovery from the surgery. There were a lot of sleepless moments. But in the morning about 4:00-4:30 the great nursing staff would start to make their rounds to get ready for the doctors 6 am rounds. This proved to be some of the best times that we have ever had together.
As we would wake, we would start to talk, sharing life together and just talking about everything, and we would pray together. During this time in the hospital there was more healing taking place than just in Danene’s body. God was working on our relationship with each other as well as our relationship with him. “Husbands love your wife as Christ loves the church” Ephesians 5:25. I was not doing my job very well, and it’s something I have to work at everyday. God helps me with this process daily but only when I ask Him and allow Him to have control over my life. God has given us the second greatest gift He could give us: our wife; the greatest gift is His Son, Jesus. Guys, if you keep the relationship right with Jesus, He will help you keep your relationship right with your wife. You all just need to be thankful for the gift that God the Father has given us. Love the wife that completes you, cares for you, feeds you, cares for your kids, and loves you in spite of all of your shortcomings. Providing for her needs is just not going to work and bringing home the bacon.
Each morning when I wake it brings me joy to see my wife breathing, sleeping, and recovering from yet another day of meds. I just have to stop and give thinks for this gift that God has given. I will get on my knees before God and give Him the praise and thanks that He deserves. This past year has brought us through a lot of ups and downs as Danene battles with this wretched disease. We continue to serve God and we stand on the promise that “Everything is possible for him who believes in Christ Jesus” Mark 9:23. Some of you ask us “what can we do for you guys?” I would say to you to love your wife/husband so that you can be a good witness to your kids, family, and the world around you. Share the love Jesus showed us when he died on the cross to those around you and fulfill the great commission.
Danene and I will not question why it has come to pass that she got cancer. We will only hope that God will be glorified with our walk with Him through this process. Please continue to pray for us and for Danene’s healing, but only after you have prayed for your spouse.
In God’s Love, we are thankful for you all,
Matt (Danene’s husband and partner in life).
Over the past couple of days I have been just overwhelmed with something I need to share. As most of you know, a year ago Danene had what we know as life saving surgery to remove her left kidney. During the recovery process in the hospital something happened to our relationship. There were three nights in a row that I stayed the night to get her through the painful recovery from the surgery. There were a lot of sleepless moments. But in the morning about 4:00-4:30 the great nursing staff would start to make their rounds to get ready for the doctors 6 am rounds. This proved to be some of the best times that we have ever had together.
As we would wake, we would start to talk, sharing life together and just talking about everything, and we would pray together. During this time in the hospital there was more healing taking place than just in Danene’s body. God was working on our relationship with each other as well as our relationship with him. “Husbands love your wife as Christ loves the church” Ephesians 5:25. I was not doing my job very well, and it’s something I have to work at everyday. God helps me with this process daily but only when I ask Him and allow Him to have control over my life. God has given us the second greatest gift He could give us: our wife; the greatest gift is His Son, Jesus. Guys, if you keep the relationship right with Jesus, He will help you keep your relationship right with your wife. You all just need to be thankful for the gift that God the Father has given us. Love the wife that completes you, cares for you, feeds you, cares for your kids, and loves you in spite of all of your shortcomings. Providing for her needs is just not going to work and bringing home the bacon.
Each morning when I wake it brings me joy to see my wife breathing, sleeping, and recovering from yet another day of meds. I just have to stop and give thinks for this gift that God has given. I will get on my knees before God and give Him the praise and thanks that He deserves. This past year has brought us through a lot of ups and downs as Danene battles with this wretched disease. We continue to serve God and we stand on the promise that “Everything is possible for him who believes in Christ Jesus” Mark 9:23. Some of you ask us “what can we do for you guys?” I would say to you to love your wife/husband so that you can be a good witness to your kids, family, and the world around you. Share the love Jesus showed us when he died on the cross to those around you and fulfill the great commission.
Danene and I will not question why it has come to pass that she got cancer. We will only hope that God will be glorified with our walk with Him through this process. Please continue to pray for us and for Danene’s healing, but only after you have prayed for your spouse.
In God’s Love, we are thankful for you all,
Matt (Danene’s husband and partner in life).
Wednesday, September 23, 2009
It's Been a Year
Dear Friends,
One year ago today, Matt, my mom, and I sat in the doctor's office and had it confirmed that I had kidney cancer. Two days later, after two nights in the ER, I would be admitted to the hospital. Oh my, what a year it has been since that day. On that day, I don't think I would have thought it possible to say this, but it has been a year for which I now have an abundance of things to give thanks for.
From that day forward, Matt and I had to decide just how much we believed in the God we have always followed and trusted in. Would we love Him and follow Him if things didn't go the way we wanted them to? Could we stand firmly on His Word even when we doubted? Would He be enough to get us through the many unknowns we would have to face? To all, we can unreservedly say YES! He has proven Himself to be truth, to be patient, to be compassionate, to be our comforter, to be our wisdom, to be God. I couldn't have made it this far without Him. I give my eternal thanks to Him.
This year has been full of family and friends...phone calls, caring words, shared Bible verses, cards and emails, meals, invitations to my kids to spend days and nights with friends, people who have cleaned and ironed and cooked and did so many things that I would never have asked for but they were willing to do anyway. I am beyond grateful.
And it's been a year of prayer. Your prayers for me and my husband and kids, for my family, for my doctors, for treatments and side effects, for wisdom in making decisions, for strength in times of weakness and doubt, and for healing. Your prayers have sustained me.
I don't know what the next year holds, I just know that God is continuing to grow me into the woman He wants me to be. It isn't easy, it isn't really something I want to go through, but if it is drawing me closer to Him, molding me to be more like Him, and making me bolder to share Him, then so it will be.
I will continue to give thanks,
Danene
September 23, 2009
One year ago today, Matt, my mom, and I sat in the doctor's office and had it confirmed that I had kidney cancer. Two days later, after two nights in the ER, I would be admitted to the hospital. Oh my, what a year it has been since that day. On that day, I don't think I would have thought it possible to say this, but it has been a year for which I now have an abundance of things to give thanks for.
From that day forward, Matt and I had to decide just how much we believed in the God we have always followed and trusted in. Would we love Him and follow Him if things didn't go the way we wanted them to? Could we stand firmly on His Word even when we doubted? Would He be enough to get us through the many unknowns we would have to face? To all, we can unreservedly say YES! He has proven Himself to be truth, to be patient, to be compassionate, to be our comforter, to be our wisdom, to be God. I couldn't have made it this far without Him. I give my eternal thanks to Him.
This year has been full of family and friends...phone calls, caring words, shared Bible verses, cards and emails, meals, invitations to my kids to spend days and nights with friends, people who have cleaned and ironed and cooked and did so many things that I would never have asked for but they were willing to do anyway. I am beyond grateful.
And it's been a year of prayer. Your prayers for me and my husband and kids, for my family, for my doctors, for treatments and side effects, for wisdom in making decisions, for strength in times of weakness and doubt, and for healing. Your prayers have sustained me.
I don't know what the next year holds, I just know that God is continuing to grow me into the woman He wants me to be. It isn't easy, it isn't really something I want to go through, but if it is drawing me closer to Him, molding me to be more like Him, and making me bolder to share Him, then so it will be.
I will continue to give thanks,
Danene
September 23, 2009
Wednesday, September 16, 2009
A Short Update
Okay, Friends,
I got the results from the radiologist, and I will tell you what I can, but most of it is in language that I don't totally understand, even with my Medical Terminology for Dummies book at my side. They couldn't use a contrast dye during the scans this time because my creatinine level was on the high side, so the findings weren't as clear as in the past.
On the chest scan, there is an increase in size and number of noncalcified pulmonary (lungs) nodules. In the left lower lobe, the nodule appears to be slightly more nodular and enlarged at 1.4 cm x 2.2 cm. (previously .7 cm x 2.0 cm.) There is also development of pleural effusions, which is the escape of fluid into the pleural cavity, which surrounds the lungs. That is the part that could or could not involve my cough. The doctor just isn't sure. There also is evidence that some of my lymph nodes show progression of the disease.
On the abdomen/pelvic scan, there is a soft tissue mass in the left lower quadrant that has increased in size from 1.5 cm to 2.2 cm. All of this is consistent with metastatic progression.
So, here's the thing. All of that says that the disease is still trying to win, but I'm still in the fight. So join me as I hit my knees, figuratively and literally, and turn it all over to God. I may not understand completely what is happening, but He knows, and I trust Him with my life.
Love you all,
Danene
September 16, 2009
I got the results from the radiologist, and I will tell you what I can, but most of it is in language that I don't totally understand, even with my Medical Terminology for Dummies book at my side. They couldn't use a contrast dye during the scans this time because my creatinine level was on the high side, so the findings weren't as clear as in the past.
On the chest scan, there is an increase in size and number of noncalcified pulmonary (lungs) nodules. In the left lower lobe, the nodule appears to be slightly more nodular and enlarged at 1.4 cm x 2.2 cm. (previously .7 cm x 2.0 cm.) There is also development of pleural effusions, which is the escape of fluid into the pleural cavity, which surrounds the lungs. That is the part that could or could not involve my cough. The doctor just isn't sure. There also is evidence that some of my lymph nodes show progression of the disease.
On the abdomen/pelvic scan, there is a soft tissue mass in the left lower quadrant that has increased in size from 1.5 cm to 2.2 cm. All of this is consistent with metastatic progression.
So, here's the thing. All of that says that the disease is still trying to win, but I'm still in the fight. So join me as I hit my knees, figuratively and literally, and turn it all over to God. I may not understand completely what is happening, but He knows, and I trust Him with my life.
Love you all,
Danene
September 16, 2009
Monday, September 14, 2009
A Chuckle for the Day
Well, Friends,
I think this time circumstances call for me to begin with a little levity. So here's your chuckle for the day:
Is My Duck Dead?
A woman brought a very limp duck into a veterinary surgeon. As she laid her pet on the table, the vet pulled out his stethoscope and listened to the bird's chest. After a moment or two, the vet shook his head sadly and said, "I'm sorry, your duck, Cuddles, has passed away." The distressed woman wailed, "Are you sure?" "Yes, I am sure. The duck is dead." replied the vet. "How can you be so sure?" she protested. "I mean, you haven't done any testing on him or anything. He might just be in a coma or something." The vet rolled his eyes, turned around and left the room. He returned a few minutes later with a black Labrador Retriever. As the duck's owner looked on in amazement, the dog stood on his hind legs, put his front paws on the examination table and sniffed the duck from top to bottom. He then looked up at the vet with sad eyes and shook his head. The vet patted the dog on the head and took it out of the room. A few minutes later he returned with a cat. The cat jumped on the table and also delicately sniffed the bird from head to foot. The cat sat back on its haunches, shook its head, meowed softly and strolled out of the room. The vet looked at the woman and said, "I'm sorry, but as I said, this is most definitely, 100% certifiably, a dead duck." The vet turned to his computer terminal, hit a few keys and produced a bill, which he handed to the woman. The duck's owner, still in shock, took the bill. "$150!" she cried, "$150 just to tell me my duck is dead?" The vet shrugged, "I'm sorry. If you had just taken my word for it, the bill would have been $20. But with the Lab report and the Cat scan, it's now $150."
When you're done laughing, I'll fill you in the fact that Matt and I spent the day in San Francisco. I had my CT scans done early this morning at UCSF's China Basin facility, then we had the chance to stroll around near Union Square for awhile, and ate at the most wonderful hole-in-the-wall place called Dottie's. Undeniably one of the best breakfasts I have had in a long while, and a joy to sit at the counter and watch the two cooks at the stove create. By 12:30, we were at Mount Zion meeting with Dr. Ryan.
While we had my blood test results, and the doctor had seen my chest scan, we did not have the rest of the scans nor the radiologist's report yet. So I will have to update you as I receive those results from the doctor in the next few days. My blood test showed that my creatinine level was high (in short, the amount of waste that my kidney allows through), and that my liver functions were high. These are both attributed to the Sutent, and the creatine also to the fact that I only have one kidney. My thyroid's TSH level, if you recall, was extremely low last time, and this time the TSH was almost five times higher than the highest normal level. So I will begin on thyroid replacement to see if it can be helped, and hopefully in the process will gain some energy and have some other things straighten out.
My cough is not better, and the good doctor is not sure exactly what to attribute it to. It could be just seasonal, but it also could be a result of what is going on in my lungs. Again, I don't have all the details yet, so be patient as we continue to receive information and confirm things, but it appears there could be some sort of pneumococcal growth, as well as at least one nodule that has continued to grow. The Sutent is not 'not working', but it is not working to the degree that it needs to be. With many kinds of chemo, when it is not working, it is in the best interests of the patient to take them off of it. That is not the case with this kind of chemo. Sutent is a chemo that creates a kind of wall between the cancer and its ability to receive oxygen and grow. On the other side of the wall, it is possible for the blocked effects to begin to back up and build, so that if you were to abruptly remove the 'wall', it could advance with greater force, causing the cancer to have a big growth spurt of sorts. There are other types of this same chemo I could try, but right now UCSF and a manufacturer are at the end of a phase of a trial that the doctor would like me to look into that might provide a better attack. It would involve taking a different form of this same type of chemo, but simultaneously taking a second form of a different type of chemo that attacks kidney cancer in another way. If the doctor running the trial, and her team, which includes my doctor, feels that I am a good fit for this, it would put me in the second phase of this trial, which is to see how this combination attacks kidney cancer. This second drug is FDA approved, and the patients in the first phase have participated to see what is the highest level of this chemo that can be taken with the other one, with the lowest bad side effects. I have a lot of respect for those patients.
Since there are still some administrative things going on with phase one of the trial, I will go on one more round of Sutent starting Thursday night, then meet with Dr. Ryan in six weeks to make some decisions as to what is next. I will hear from the doctor who heads up the trial in the next few days, to learn more and have many questions answered.
Matt and I have sat in many doctor's offices over the past year, and we have heard many different things that have changed our lives in ways we would have never dreamed of. My attitude has always been that I just need to know what you want me to do and I will do it. I'm ready to fight, and I'm in it for the long haul. But today hurt, and for the first time, I cried on the way home. Then as I listened on my iPod to a Michael W. Smith song, I was struck by these words:
"And even now that I'm inside your hands
Help me not to grow prideful again
Don't let me forsake sacrifice
Jesus, You be lifted high
And if I'm blessed with the riches of kings
How could I ever think that it was me
For You brought me from darkness to light
Jesus, You be lifted high"
For the first time, it was as if I was hearing God tell me to get out of the way and let Him. Whatever happens, whatever the fight, whatever the course of action, do my part, but leave the rest to Him. He will take care of the long haul, whatever it may be, and in the end I just need to fall to my knees so it's Him that you see, not me.
Help me hold true to that, my friends. Continue to pray for my family, and especially my husband. Take the time to ask him how HE is doing, not how I am doing. I would appreciate that. I love you all.
Danene
September 14, 2009
I think this time circumstances call for me to begin with a little levity. So here's your chuckle for the day:
Is My Duck Dead?
A woman brought a very limp duck into a veterinary surgeon. As she laid her pet on the table, the vet pulled out his stethoscope and listened to the bird's chest. After a moment or two, the vet shook his head sadly and said, "I'm sorry, your duck, Cuddles, has passed away." The distressed woman wailed, "Are you sure?" "Yes, I am sure. The duck is dead." replied the vet. "How can you be so sure?" she protested. "I mean, you haven't done any testing on him or anything. He might just be in a coma or something." The vet rolled his eyes, turned around and left the room. He returned a few minutes later with a black Labrador Retriever. As the duck's owner looked on in amazement, the dog stood on his hind legs, put his front paws on the examination table and sniffed the duck from top to bottom. He then looked up at the vet with sad eyes and shook his head. The vet patted the dog on the head and took it out of the room. A few minutes later he returned with a cat. The cat jumped on the table and also delicately sniffed the bird from head to foot. The cat sat back on its haunches, shook its head, meowed softly and strolled out of the room. The vet looked at the woman and said, "I'm sorry, but as I said, this is most definitely, 100% certifiably, a dead duck." The vet turned to his computer terminal, hit a few keys and produced a bill, which he handed to the woman. The duck's owner, still in shock, took the bill. "$150!" she cried, "$150 just to tell me my duck is dead?" The vet shrugged, "I'm sorry. If you had just taken my word for it, the bill would have been $20. But with the Lab report and the Cat scan, it's now $150."
When you're done laughing, I'll fill you in the fact that Matt and I spent the day in San Francisco. I had my CT scans done early this morning at UCSF's China Basin facility, then we had the chance to stroll around near Union Square for awhile, and ate at the most wonderful hole-in-the-wall place called Dottie's. Undeniably one of the best breakfasts I have had in a long while, and a joy to sit at the counter and watch the two cooks at the stove create. By 12:30, we were at Mount Zion meeting with Dr. Ryan.
While we had my blood test results, and the doctor had seen my chest scan, we did not have the rest of the scans nor the radiologist's report yet. So I will have to update you as I receive those results from the doctor in the next few days. My blood test showed that my creatinine level was high (in short, the amount of waste that my kidney allows through), and that my liver functions were high. These are both attributed to the Sutent, and the creatine also to the fact that I only have one kidney. My thyroid's TSH level, if you recall, was extremely low last time, and this time the TSH was almost five times higher than the highest normal level. So I will begin on thyroid replacement to see if it can be helped, and hopefully in the process will gain some energy and have some other things straighten out.
My cough is not better, and the good doctor is not sure exactly what to attribute it to. It could be just seasonal, but it also could be a result of what is going on in my lungs. Again, I don't have all the details yet, so be patient as we continue to receive information and confirm things, but it appears there could be some sort of pneumococcal growth, as well as at least one nodule that has continued to grow. The Sutent is not 'not working', but it is not working to the degree that it needs to be. With many kinds of chemo, when it is not working, it is in the best interests of the patient to take them off of it. That is not the case with this kind of chemo. Sutent is a chemo that creates a kind of wall between the cancer and its ability to receive oxygen and grow. On the other side of the wall, it is possible for the blocked effects to begin to back up and build, so that if you were to abruptly remove the 'wall', it could advance with greater force, causing the cancer to have a big growth spurt of sorts. There are other types of this same chemo I could try, but right now UCSF and a manufacturer are at the end of a phase of a trial that the doctor would like me to look into that might provide a better attack. It would involve taking a different form of this same type of chemo, but simultaneously taking a second form of a different type of chemo that attacks kidney cancer in another way. If the doctor running the trial, and her team, which includes my doctor, feels that I am a good fit for this, it would put me in the second phase of this trial, which is to see how this combination attacks kidney cancer. This second drug is FDA approved, and the patients in the first phase have participated to see what is the highest level of this chemo that can be taken with the other one, with the lowest bad side effects. I have a lot of respect for those patients.
Since there are still some administrative things going on with phase one of the trial, I will go on one more round of Sutent starting Thursday night, then meet with Dr. Ryan in six weeks to make some decisions as to what is next. I will hear from the doctor who heads up the trial in the next few days, to learn more and have many questions answered.
Matt and I have sat in many doctor's offices over the past year, and we have heard many different things that have changed our lives in ways we would have never dreamed of. My attitude has always been that I just need to know what you want me to do and I will do it. I'm ready to fight, and I'm in it for the long haul. But today hurt, and for the first time, I cried on the way home. Then as I listened on my iPod to a Michael W. Smith song, I was struck by these words:
"And even now that I'm inside your hands
Help me not to grow prideful again
Don't let me forsake sacrifice
Jesus, You be lifted high
And if I'm blessed with the riches of kings
How could I ever think that it was me
For You brought me from darkness to light
Jesus, You be lifted high"
For the first time, it was as if I was hearing God tell me to get out of the way and let Him. Whatever happens, whatever the fight, whatever the course of action, do my part, but leave the rest to Him. He will take care of the long haul, whatever it may be, and in the end I just need to fall to my knees so it's Him that you see, not me.
Help me hold true to that, my friends. Continue to pray for my family, and especially my husband. Take the time to ask him how HE is doing, not how I am doing. I would appreciate that. I love you all.
Danene
September 14, 2009
Thursday, September 3, 2009
I'm Singing
Hi, Friends,
Round Seven is over! It felt good knowing I did not have to take a pill tonight. It's been a tough week. Last Friday I ended up missing school and went to the doctor instead. I had a sinus infection (am taking penicillin but am doing much better), and that dreaded cough from the year before returned, so the doctor changed the type of inhaler I am using to one that is longer lasting and more preventative. It finally feels like it might be working as I am not coughing quite as often, but still deeply. The end of the meds hit hard with tiredness, pretty bad spots on my thumbs and one of my fingers, bruises appearing out of nowhere, and spots of hair thinning and breaking. So I get a two week break to recover, have a blood test, and find out just what good the medicine is doing with another set of scans. It's hard not to get anxious around this time, wondering about the unknown.
Kari Jobe is a favorite singer of mine. She has the most pure and beautiful voice and can make a song touch your soul. She sings a song called 'I'm Singing", about singing to the God who brings redemption to the nations; the One who wrote the book on our salvation; who covers us in grace. I'm singing praise to the One who wrote the lines of my life. I'm singing about things like a husband who has stood by me through more than he ever thought he would have to this past year. I'm sure he would like to not hear anything about cancer for a day or two from me or anyone else. But, nonetheless, he hears about it daily in some form or reminder or so. When I woke him up just 15 minutes before the alarm was to go off this morning, and asked him to pray for the muscles in my abdomen that were spasming from the coughing, he rolled over, put his hands on me, and began praying to the One we know listens to the cries of our hearts. And as he prayed, I began to relax and felt the pain slowly begin to slip from my body. There are many times in our lives that we feel far from being in the singing mood. Perhaps those are the times we most need to find reasons to sing. What are you singing about today? I'm sure there is something that you can find to sing praises about to the One who has done so much for you.
Sing!
Danene
September 3, 2009
Round Seven is over! It felt good knowing I did not have to take a pill tonight. It's been a tough week. Last Friday I ended up missing school and went to the doctor instead. I had a sinus infection (am taking penicillin but am doing much better), and that dreaded cough from the year before returned, so the doctor changed the type of inhaler I am using to one that is longer lasting and more preventative. It finally feels like it might be working as I am not coughing quite as often, but still deeply. The end of the meds hit hard with tiredness, pretty bad spots on my thumbs and one of my fingers, bruises appearing out of nowhere, and spots of hair thinning and breaking. So I get a two week break to recover, have a blood test, and find out just what good the medicine is doing with another set of scans. It's hard not to get anxious around this time, wondering about the unknown.
Kari Jobe is a favorite singer of mine. She has the most pure and beautiful voice and can make a song touch your soul. She sings a song called 'I'm Singing", about singing to the God who brings redemption to the nations; the One who wrote the book on our salvation; who covers us in grace. I'm singing praise to the One who wrote the lines of my life. I'm singing about things like a husband who has stood by me through more than he ever thought he would have to this past year. I'm sure he would like to not hear anything about cancer for a day or two from me or anyone else. But, nonetheless, he hears about it daily in some form or reminder or so. When I woke him up just 15 minutes before the alarm was to go off this morning, and asked him to pray for the muscles in my abdomen that were spasming from the coughing, he rolled over, put his hands on me, and began praying to the One we know listens to the cries of our hearts. And as he prayed, I began to relax and felt the pain slowly begin to slip from my body. There are many times in our lives that we feel far from being in the singing mood. Perhaps those are the times we most need to find reasons to sing. What are you singing about today? I'm sure there is something that you can find to sing praises about to the One who has done so much for you.
Sing!
Danene
September 3, 2009
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